What It's Like: One family's A-Z journey through Autism

Month: January 2017

As Kelly knelt on the floor folding her lighting equipment into her duffel, she looked up at me and said in earnest, “I feel like we have to do this fast. These stories need to get out now.” I felt the sick sink in my stomach because I knew she was right, but we just got started.

I half jokingly refer to Kelly as “my photographer” only because “this girl who agreed to come along to take the photos of interviews I am doing for this idea I had and had no idea what she was getting into” sounds lame..and lengthy. Plus her quiet role moving about the room with the important strangers who agreed to bare their souls to me for two hours gave them legitimacy. What do you call the person who helps provide authenticity to an experience? I don’t get to own that part.

Kelly bore witness to a world she knew nothing about three months before she spoke those words to me in an Airbnb in Dallas, Texas. I met Kelly randomly through a friend the previous summer at a concert. She was a confident, ticketless passenger on the way to a sold out show and found a scalper feet from the venue. I appreciated the cajones and thought she might be someone I would want to know. I did not realize that five months later, on January 27, 2016 we would be sitting for our first interview of a few dozen across the country.

We officially started a whole year ago as of today. Happy anniversary Kel.

Words like inclusion, rights, entitlements, supports are finally part of every day vernacular but even by definition imply separatist “us from them”mentality and leave out the miles of mountain range between the first mile and the last. But to me, those words felt like more than just a start.

When I got up off the pavement a year ago, I believed society and disability subculture were starting to speak some of the same language. I also believed that some of the narratives were getting further and further apart causing a rift within the movement. The time felt ripe to help normalize the experience of being disabled in a way that was not out of pity but rather in a way that lit up the path to be traveled. It was time to assume that folks were coming from a place of not knowing and not from a place of not caring. My personal mental exhaustion was not about my child or his disability, but the wholly unnecessary loneliness, barriers and misunderstanding by the world around us. How off the hook is it I believed changing the world around us would be simpler and more empowering than kicking those pebbles out of the path one at a time?

At the time, not so hookless. I gave a TEDx Talk about the first step in climbing the mountain of disability advocacy as a society. The itty-bitty baby steps of encouraging the general public to lay down misconceptions and engage in discourse with someone who is disabled. I encouraged people to unabashedly just ask about things they don’t know. I called upon the disabled and their caregivers to collectively lift the stigma of living with disability by being honest and non-defensive in talking about what it’s like and what they need. I traveled the country and spent hours and hours recording and photographing and connecting to regular people in extraordinary circumstances to put into pages and immortalize moments on glossy paper for them. I shined up a little piece of the internet for myself under a pen name to create and share in the most balanced way I could. People were believing in what I was saying. People were hopeful. I changed minds. Momentum. Or so I thought.

Through this process, I held the value of neutrality and being non-partisan. Everybody’s story resides in the same place within them regardless of the story’s beginning, middle or end. Allowing people to tell their story while providing them with unconditional positive regard served as a catharsis for both myself and my interviewees. I found it was not difficult to empathize with people whose world I didn’t fully understand or framework I did not fully agree. In social media, I shared stories of injustice or cruelty without solution or politics. Awareness is the first step of acceptance…it is not the end result.

Alas, I am not an advocate. I am a storyteller.

One year later, I am sitting at the same desk but in a very different place. I feel scared. Was I was horribly wrong about this genesis of readiness for change? It has been a challenge to remain non-partisan especially in a time when it seems that perhaps these stories sink to the bottom of the advocacy pile.

The other night as I sat hunched over my computer trying to put a cap on my 1 year experience, I tearfully told my husband we are beyond storytelling at this point. I am fearful of having too much opinion out of concern of not holding my neutral credo for the greater good. It goes against my nature as a social worker. There is a war going on between human rights, human entitlement and government in a narrative that is getting louder and undeniably self-serving to each individual yelling. This goal of reasonable human rights only has a matter of time before we are splintered into pieces again and we are fighting against each other get what we need. It is hard to see where or how this will end right now. Issues that are truly a big deal today may seem like the good-ole-days in the near future. I worried about the juxtaposition of storytelling in an ocean of endless islands of stories. I was feeling disheartened and selfish that evening that this project was down the tubes.

Instead of walking away like he might during a moment like this, my husband turned and said “What if this is about change for the better after all?” He went on to contemplate the lack of passion and purpose as a whole in this country in our lifetime. The things that divide us and crawl under our skin has created less listening and more waiting for our turn to talk. Or worse yet, NOT waiting for our turn to talk and yelling over the opposition instead. He optimistically reframed this unprecedented business-as-politics as the catalyst of the birth of this generation’s common cause. The most powerful man in the world and those who surround him believe that there are “alternative facts” leading the rest of us into a state of despair and confusion over the possibility of never understanding what is true or real. This is the stuff of propoganda and crazy-making.

“But…hasn’t that been your truth for years?” my husband asked.

He was right. Those of us who live with oppression in some way or another in this country have been working off the premise of alternative facts for a long time. At least those of us who are caregivers to those with disabilities who may not be able to speak for themselves, we are told over and over to accept half-truths or are simply told “no” for nebulous reasons when asking for inclusion, equality or safety. Or else we are dismissed,discounted or ignored. This is not new. Some of us sink into deep holes of acceptance of this and others of us jump up and down and yell as loud as we can. And sometimes we do both in intervals. It is through this collective place we can pull together instead of being one small group spitting into the wind while down wind from us is some other oppressed group covering both of us in spittle.

“I wonder if there will grow a common one big enough to make the noise it needs to? People as a whole are a lot more awake than they were…and maybe that is not so bad” he mused.

Regardless of what you believe or how oppressed or even how entitled you are, it is time. Listen calmly. Don’t wait for your turn to talk. Take the information you get from other people’s stories and learn from them even if you disagree. Even if you don’t understand. These words may help heal or give you the tools to fight even harder or maybe even change your mind. We can yell as much as we want in the faces of those who don’t want to hear….collectively it may eventually work…but individually, that will not change their minds in a world where people are desperately trying to cling to what they think they believe.

It is time. We all have a story. Kelly can tell you what it is like to bear witness to that listening from behind a camera first hand.

While it is understandable why a parent like myself with a child with significant disabilities within a public education and governmental system would feel overwhelmed by all of the details, the truth is I felt that way about political systems before I even had children. I am very Gestalt and particularly nervous when it comes to leaving out a detail. The Whole Is A Sum Of Its Parts is most assuredly how I have always seen the world. If I miss a piece, I promise I won’t understand the big picture. Often the bigger problem is knowing whether I have missed a piece, so I comb and comb for those pieces until I end in a pile of crumbs. And then? Well…..once I sweep up…watch out.

Our collective current public educational system is fraught with problems that overwhelm me to even consider how they can be overcome in a fair and meaningful way.

And to be clear, this does not mean our educators are at the top of the problem list. I would challenge anyone who believes this is the case to go spend one year as an educator in even a high performing suburban school district. The financial, legal, logistical and social constraints that exist would send a person without the passion to make a difference in the the lives of kids running to do almost anything else. The issues that exist in public education are systemic in nature. They are systemic but not static so I have believed it possible to slowly turn the ship around. Fully funding IDEA would be a great start…but that is the thing about getting overwhelmed by details. Out of survival, you hone in on what will have the most impact on your own world to create your own big picture.

It would be easy to turn this into a 5000 word article and focus on all the talking points about why public education is failing everyone and also on all the fundamentally terrific things public education is doing right. But focusing on those things is the parlor trick we all seem to be falling for these days. The guy with the horns and the trident is awfully entertaining with his sleight of hand while we’re busy, a well heeled woman sitting before the Senate is making plans to create a systemic and fundamentally flawed plan to oppress and contain the most vulnerable children.

There is no time to yell about unions or standardized testing or who we are not listening to when we don’t have an adequate solution and you don’t have the details to understand why they are there in the first place. It’s like slapping yourself in the face.

Yesterday at the Senate hearing for confirmation of Secretary of Education, opponents of Betsy DeVos were alarmed at just how unqualified she appears to be for this position as evident by her lack of knowledge of crucial educational and fiscal details and seeming inability to directly answer questions. Mrs. DeVos struggled in the brief periods of questioning to give details about how she will ensure/protect/educate. I am not so certain that having someone who understands every detail of public education is actually necessary or even preferable.

However, I do not believe that Betsy DeVos was one bit “confused” about the Individuals with Disabilities Education Act being federal law and not something that the states decide. I do not believe that she doesn’t understand the difference between proficiency and progress. I do not believe that she was having trouble answering questions but rather she answered those questions loud and clear.

Should all schools, public, private and charter have EQUAL accountability standards when accepting taxpayer funding?

Do you think that all schools receiving federal dollars should have to adhere to the Individuals with Disabilities Education Act?

Should schools receiving government funding have to have the same reporting systems for bullying and harassment?

Will you enforce the law for disabled children should the charters go into place and they might be accepted at the charter?

Will you defund or privatize public school?

Instead, Mrs. DeVos let those members of the Senate know how happy she would be to make these discussion points in the future.

No…. I don’t think Betsy DeVos was confused. I think she doesn’t care, because in her world the devil is in THOSE details and it appears sometimes the devil comes in the form of anyone different or disadvantaged.

Her plan it seems is to create selective schools that she won’t state whether they will adhere to the federal civil rights protection for disabled students or potentially even for just their protection at all. Over time, disabled students and socially/economically disadvantaged students, students with behavioral issues are going to once again be segregated due to selective admissions processes, “waiting lists” differences in educational accountability and financial discrepancies between those who can afford the gap in tuition not covered by a voucher. There will be no such thing as inclusion in schools it will vanish with the details.

For me, this isn’t a matter of lack of understanding or even sour grapes. I live in a state where there is a “scholarship” program available for students identified with a disability which we used for A2 through pre-k and kindergarten. Given his Autism diagnosis, he qualified for (at the time) a $20,000 voucher through the state board of education to use with a scholarship provider. Our district was still responsible for writing his IEP so we would meet annually to update. We found an excellent match for him at a local private, not-for-profit Autism school and in just three months I was pleased to show our district the tight data tracking his improvements.

Short of realizing he wasn’t getting everything he needed in public school, overall, we had a positive experience using this system because the stars were aligned. A kid happened to move away opening a spot in the classroom, otherwise A2 would have been on a waiting list. Our district did not transport him so I was unable to work much so I could take him the 20 mile round trip jaunts twice a day. Things were very tight for awhile because we were still responsible for $8000 a year out of pocket toward the tuition.

The biggest trade off? By accepting the scholarship, we relinquished our rights to FAPE (Free and Appropriate Public Education). In other words our “school choices” were:

Stay put and spend thousands on attorneys to try to prove he was not getting an appropriate education (as evidenced by the amount of progress he made with a specialized ABA program)–but in the meantime, if we filed due process based on the law, he would have had to “stay put” until a resolution. Which could be years.

Find another school that could accept him, provide our own transportation, find $24,000 for three years of out of pocket expenses AND hope he gets what he needs because the private school technically does not have to follow the IEP. Nor technically are there any repercussions for not meeting his needs.

Choice? Like the Sophie’s Choice of the outcome of my child’s future. They both sucked. We only had a brief period of time to harness the little spongy brain of his. We were very, very lucky it worked out the way it did. But we were also very, very lucky because we are upper middle class white, intact suburban family with one paycheck that covered everything and a kiddo who did not present with behaviors too difficult to handle. We were very, very lucky because the school was pretty great at what they did with a caring team to boot. I am not against the idea of a voucher system and school choice, but in order for it truly to be choice, the playing field must be appropriately leveled. Otherwise, it is only really a choice for some.

Betsy DeVos wants to turn this ship around, but there is a huge iceberg in the way and only enough lifeboats for the privileged and the able-bodied leaving everyone else, including my beautiful boy to go down with the ship. Our educational system needs fixing, no doubt…but first do no harm.

After seeing a thread from another writer today about the topic of trauma response in reference to the state of hypervigilence as special needs parents and all of the universal agreement, I thought I would share this again as winter break winds to a close…..

There is a large manila envelope still sealed sitting on my desk. No matter how much I stare at it it doesn’t:

1. Spontaneously burst into flames

2. Disappear

3. Take care of itself.

It does not contain a subpoena, a warrant for my arrest or an eminent domain letter. It was not delivered certified mail or by official messenger. It was hand delivered by my 6th grader because the teacher very graciously contacted me ahead of time to ask me how I would like the prior written notice papers from the last IEP meeting delivered so I could sign and return them in a timely manner to the school. It has been sitting and judging me silently for over three months now as it sits untouched. I am reduced to a Pavlovian dog except my bell is an envelope and my saliva is anxiety. A crippling-can’t-get-any-thing-else-done anxiety. And I…